Stanley’s Third Birthday – Post Heart TransplantPosted by bhayden on Jul 9, 2015 in Blog, Books, Updates | 2 comments
You do remember I’ve named my new heart “Stanley”. Calling my new heart, “the new heart” seemed too impersonal. Yes – Stanley is great, and his check up a couple of weeks ago showed ZERO rejection and that he was in perfect health.
Let me begin by thanking the 300,000 + people from all over the world who have followed my journey and sent me well wishes, good vibes, kept me in their thoughts and sent prayers of all types. The power of all that you have done has brought me through a most hazardous journey and found me alive and well three years later.
It is hard to believe that three years have come and gone since that fateful day in 2012, yet here I am. And although I am here, it did not come without a battle or two. Among my trials were blood clots, lymph edema, pneumonia, skin disorders, lung disorders, myriad immune -suppression related issues, enlarged right atrium and fatigue to name a few.
Piece of cake. I had far more victories. I rode a stationary bike 5 miles averaging 10 miles per hour! I can drive where I want – when I want. I can swim with my grandchildren and do battle in the water and race with inner tubes. Denise and I had the opportunity to be in New York City this past March; during all the snow storms. That didn’t slow us one step. We walked for miles upon miles in the snow – in the storms and we had a blast – and I didn’t drop dead! With minimal assistance, I built a wonderful garden and landscaped our back yard. Oh, and did I tell you…I am alive to enjoy the company of my family, my friends and my wife Denise.
I have so much more to tell you. Before I do, I would like to share excerpts from the last two chapters of “Road To Transplant” with you. The first chapter,“The Last Five Weeks” will give you context. Its not a long read and it is mostly excerpts. In the second chapter, “Transplant Day” I will take you with me from the time I get up in the morning to the moment we receive the call – to all of the chaos and emotion that ensues. Enjoy these two chapters and I will continue our discussion on the other side. “Transplant Day” took place precisely three years ago today – July 9, 2012.
“The Last Five Weeks”
Waiting for a new heart took on a completely new meaning this week. We recently received word that one of the post-transplant members of the heart transplant support group had passed. I don’t have the details, except to say that the people running the group were surprised to hear the news. It is a stern reminder that heart transplants are no walk in the park. Sure, people hear about them all the time. Certainly, they are safer than ever, even characterized by some as ‘routine.’ Let me reiterate this for you: Survival rates the first year after transplant is 89%. This is the nationwide average, which means for every one-hundred people who get a new heart, eleven of them will die during the first year. Heart transplants are anything but routine.
For me, the choice was simple; either I get a new heart, or I die. All other options were off the table. So, despite the odds—which are only a little scary—I chose transplant. I surrounded myself with a great medical team and put my life into their capable hands. Still, after all these years of fighting heart disease and being sick, when a fellow patient dies from doing something you will be doing, it gives you reason to pause. May he and his family find the peace they so richly deserve.
As for me, my week has been mostly uneventful. After last week’s increase in Lasix, my weight began to drop. I was stable at 218 for several days, and then, two days ago my weight began to rise again; 1.2 pounds to start. No big deal, right? Well, maybe. Today I was up an additional 2 pounds. Combine that with loss of appetite, nausea, and general weakness…now I have a problem. And I came so close to getting through the week with no drama. Oh, well. Add all this to the ongoing problem of getting weaker and weaker, along with an increase in my shaking, and well…I don’t know.
As far as the weakness goes, I can no longer do the simplest of tasks. I always wanted to help by doing the dishes; just stand in front of the sink and do the dishes. It sounds easy, but I can’t stand in one place for that long. My legs begin to shake and they become tired. I can take a shower by sitting on a stool, but then I’m too tired to get out, dry myself off, and shave. Denise helps me from the shower to the bed, where I hook up with my oxygen and rest before dressing. I hate this! I am getting weaker and weaker, and I am helpless to do anything about it.
My home-health nurse came this morning, and as usual, we talk about how I am doing. I shared with her my frustrations and problems. While she was sympathetic, she knows this is the road I must travel, at least for a while longer. She said it seemed like I may end up waiting for a new heart in the hospital, she’ll report to Dr. Kwan, and that I have a regular appointment with him on June 19. I fear that the next few weeks will redefine the nature of my existence. Both Denise and I are afraid, but we keep a positive attitude and follow as much of a normal schedule as we can. We will keep hope close, and we will keep the faith in both the doctors and in God. Oh, we will be scared, but I like to keep things in perspective. I am still here!
A couple days later, I become obsessed with thoughts of my demise. It’s only three months since being listed, yet with each passing day, I feel more and more that the heart transplant will not come in time. Adding to the list of things I can no longer do is, washing my hair. It is too difficult now to keep my arms over my heads for more than a moment. Walking even the shortest distance within my home, is sometimes a struggle, and I fear that before long, walking at all will be added to the list of things I can’t do.
More addition to the problem, my arrhythmias are back and more frequent than in years. Almost daily, I find myself sitting with my hand over my chest, my head back, trying to calm myself and ease the heart beats. I’m scared as hell of being shocked again. Oh, I know that getting shocked saves my life, but it hurts like hell and I’d rather not be shocked. For those of you not familiar with my history; since having a defibrillator implanted in 1990, I’ve been shocked about twenty times. Too many times, by any measure.
Well, my home-health nurse was here this morning, and she restated what she said last week; namely, that I may have to spend my time waiting for a new heart in the hospital, and added, “You have a really sick heart, dude.”
Last Tuesday I went to go see Dr. Kwan, my transplant doctor. Dr. Kwan ordered the pacemaker interrogated, as well as several blood tests. Luckily, I have this PICC line with the extra port. No worries about needles this trip…or so I thought.
In preparation for the draw blood, she aligned the syringe and vacuum bottles, connects the syringe to the port, and then connects the vacuum tube. Nothing. She tries again and again, all with the same results…nothing. She pushed stuff in and that worked well; I could taste the metallic bitterness of the medicine as it enters my blood stream. When she pulls the plunger on the syringe, again…nothing. Apparently, I’m only getting one-way flow, but I need to have two-way blood flow, both in and out. Soon after, Dr. Kwan came in the room.
We talked for a while and he asked the usual questions, I told him about the increase of becoming tired and weak lately. I also told him of the restrictions I’m now facing in my life. After a brief and deliberate pause, he told me the symptoms I’m experiencing are side effects of the milrinone—the stuff going into the PICC line, and the amiodarone—the stuff I have been avoiding for years. He talked some more and went over the numbers coming from my heart. He told us that, while my heart is sick, the numbers are now stable and my other organs are still doing fine. Then he discussed my options.
Dr. Kwan said treating advanced heart failure is a bit of a balancing act. Not enough drugs, and my heart gets worse. Too much medicine, and I develop unfavorable symptoms. Nearly all the symptoms I have are unfixable, unless I opt for the VAD—Ventricular Assist Device—an option I have declined before. It’s called a Heart Mate II, check it out online; Dick Chaney used one before his transplant. It is a last resort measure to stay alive while waiting for a new heart, it’s also extreme surgery that I do not want. Dr. Kwan then asked which side effect is worse; dizziness from low blood pressure, or arrhythmias? He could adjust one or the other, but not both. That was easy; I can gladly accept the symptoms of low blood pressure if it meant avoiding arrhythmias. Having chosen my own poison—so to speak—he increased my Toprol to 100 mg. If you will recall, I was at that dose a month ago, but the symptoms of low blood pressure were troubling, so he lowered the dose. I will suck it up and accept the symptoms. In addition, he ordered a medication called Cath-flow. I don’t know what it is, but it should help the ‘in and out’ flow problem I’ve been experiencing. The home-health nurse will administer that next week.
Oh, that was the good news. Of course, a visit with Dr. Kwan would not be a visit with Dr. Kwan, unless there was some of the other. I have been on the milrinone for more than seven months, which is the medicine being pumped into me twenty-four-seven through the PICC line. The cautionary tale that came with this medication—paraphrasing—was that this medicine should not be used for more than a year as longer use may be harmful to other organs. In other words, the longer I use this stuff, the worse it will become for my liver, kidneys, and other parts. On that timeline, I only have four and a half months to find a heart and get off the milrinone.
Now for the not-so-good part. There is an increase in the number of people needing hearts this year, but the number of donors is decreasing. What does that mean? Dr. Kwan would not speculate, except to say the average wait time is six months—could be longer, could be less—but there’s no way to know or predict. He added that the number of nationwide transplants is less this year because there aren’t enough donors. I don’t the solution for this problem. I was listed the week of Valentine’s Day, which puts me at just over four months, but under eight months on the milrinone clock.
Last evening, I took my blood pressure; 82/52. I knew there was a reason for the way I felt, but then I stopped for a moment and smiled. I like this symptom much more than the threat of being shocked. Oh, yeah. No complaints here, just smiles.
June 29: As you may remember, I have been watching the swelling in my left leg—a symptom of DVT—an issue which continues to come and go, and come and go. I truly don’t know what is going on, so I am putting this issue into the boring pile; it will no longer trigger a ‘drama’ event.
July 2: My blood pressure continues to hinder my daily activity level as it hovers around 80/50. The doctor said not to worry about it, as long as it doesn’t drop below 80. I knew the side effects would be part of the bargain, so…low blood pressure will no longer trigger a ‘drama’ event.
July 4: Happy 4th of July! Let me start this day by asking you a question: How hard do you think it might be to get a home-health nurse all riled up? The answer: Not hard at all. Wednesday, my nurse came to change the bandage for the PICC line like does every week, and today was no different, except about halfway through, I became unresponsive.
Take this word piece by piece. Un- means “not,” as usual. A response is a reaction to something. And -ive is a suffix that means “state of being.” Taken together, these parts add up to “the state of being not responsive.” When your boyfriend just sits and stares rather than talking about what’s bothering him, he’s being unresponsive. Medically speaking, when a person is called unresponsive, it means they’re at least unconscious, and possibly dead or dying.”
Therefore, you can see when my nurse considered me ‘unresponsive,’ why her heart started to race. This is similar to the problem I described to you a few weeks back. My heart went into an arrhythmia, and apparently I became unconscious this time. Even if it was only for a few seconds, my nurse still got all serious. I told her it happens nearly every day, to some degree, but most of the time when it happens there’s nobody around. Is that like the falling tree analogy? If there is no one to see the tree fall, or to hear the tree fall, does it make noise when it falls? The analogy in this case is, if there is no one to respond to, can I, in fact, be ‘unresponsive’?
I talked this over with Dr. Kwan on my last visit, so he interrogated my defibrillator and saw no arrhythmias. Although, the machine only records events over 150 beats per minute, Dr. Kwan felt comfortable in his understanding of the problem and sent me on my way. My nurse is not so sure, and is calling Dr. Kwan today, July 4, to tell him what happened. That will almost certainly trigger a call later this afternoon, instructing me to come by his office tomorrow. The episodes continue, though, and when there is someone here to witness the event, it can be a little dramatic, I think, Yet I can’t be sure because I was kind of ‘out.’ The judgment: I will continue to consider ‘unresponsive’ episodes as ‘drama’ events.
For now, at least for this week, I have sidestepped most of the drama from last week. While drama is fun on television, let’s hope for you and me, that television is where the drama will stay!
July 9: Woke up this morning, which seems to be the good news for the day. My energy level at this point is nonexistent, and as I slouch on the sofa, Denise asks, “Are you okay?” In place of normal conversation, our dialogue is filled with questions of my health status. When noon rolled around, we decided to step out and get a bite to eat. We would usually pick a restaurant that offers healthy options, and the burger joint we chose did serve salads. I was not feeling well, on top of which, I was feeling depressed. Six months had come and gone since being listed for a new heart, and nothing. A couple hopeful offers that turned out to be of no consequence. Every day we wait, and every day…nothing.
“Give me a double cheeseburger and a chocolate milk shake,” came from my mouth without a stutter. Denise being, well…ordered a grilled chicken sandwich and a salad. As we sat and ate our meal, we talked about—or rather, questioned—my choice of lunch. I retorted something along the lines that it will be fine. They haven’t called us in six months, and they probably won’t call today. Therefore, we stay, relax, and talk about all manner of topics until it was finally time for us to leave. Denise cleared the table and refilled her diet Coke, then she returned to the table and helped me get up. I was holding onto the bag with the pump and the milrinone, so Denise supported me by the arm and pulled me up.
I adjusted myself, regained my balance, and started toward the exit. I hadn’t yet reached the door when I heard the cell phone ring. It was buried deep inside Denise’s purse, and she stepped outside and answered the call. Quietly, she handed me the phone and said it was the hospital calling. No big deal. They always call; appointment this, lab result that. There was no reason to get excited.
That is, until I heard the nurse tell me, “Brian, I have some good news. We have a heart for you.” As I listened to the last syllable fall off her tongue, time stood still, my stomach immediately turned into a knot, and I could not speak. I motioned to Denise that they have a heart for me and she froze in her tracks. I have…no, we have been waiting more than six months for this call. Correction; we have waited more than twenty years for this call, and now that the moment is upon us, I am speechless.
With tremendous shaking in my voice, I manage to ask her to repeat what she said.
She did, and then added, “The staff on the seventh floor in Cardiac ICU are waiting for you…. They will get you prepped and briefed.”
“Do I have time to go home and shower?” I asked.
“Yes, but be at the hospital by 2:00 p.m., and I will let them know,” she said. With that, I hung up the phone, turned to Denise in shock, and began to tear up. I can’t say if they were tears of happiness, or sheer fright. Quickly, though, we got into the car and made our way home. As we did, I called my daughter and told her what was going on. She would make all the subsequent notifications and meet us at the hospital.
We arrived home and I jumped into the shower. By now, the phone calls started to pour in; Denise handled them. By 1:30 p.m., we were out the door and en route to the hospital.
The reality of the situation comes full circle as we begin to enter the hospital, and I begin to shake with nervousness. Denise tightly clutches my hand, and I can tell she is as scared as me. Maybe more so. As we make it to the seventh floor and walk into the cardiac ICU, we are greeted by a nurse who asks if she can help us. After I introduce Denise and myself, the nurse immediately came over and gave us each a big hug, a happy, confident smile, and some kind words. She showed us to my room, in which I would only reside until the transplant. Then she pointed down the hall and said I would be at the surgical ICU for about a week after the surgery. Moments later, a team of two nurses from the surgical ICU came by to tell Denise and me that they would be my nurses when I arrive at the surgical ICU later on. They just wanted to stop by and introduce themselves.
Directly after the introductions, someone came by to get Denise and take her to the lounge area where she’d have to wait until I was prepped. She and others could then come in and see me; normally, only two visitors at a time are allowed in the cardiac ICU. Pre-transplant patients, however, are allowed as many as you can fit into the room. The rules are different for patients who have an 11% chance of dying in surgery.
With Denise comfortably ensconced in the lounge, the staff began to prep me. First, all my clothes must be removed, followed by all the hair on my body below my chin. Yes, everywhere; chest, back, arms, legs, groin…everywhere. Then a special scrub is used to clean me up.
Finally, after what seems like a full day, at 3:00 p.m., I was fully ready to go, and Denise was allowed back in.
As we wait, we’re joined by my son and daughter, and other friends and family, all of whom nervously await some word. I remembered it was about 5:00 p.m., and Dr. Kwan had come in to my room to tell us I was offered a heart, and it looked promising. The heart isn’t yet at the hospital, however, as it’s still keeping the donor alive. Medical teams from all over, are harvesting what they require. It is only after everything is donated, that the heart retrieval team may extract the heart and conduct a thorough examination. He told us not to get too excited yet, because this may be a dry run. He cautioned that dry runs happen frequently.
A short while later, the surgeon came in. He is a white haired old man, seemingly over seventy years. He has the reputation for being meticulous with everything in his life, including his work. His clothes are freshly pressed, despite the fact that he has worked all day. He tells us to relax, and that if it happens tonight, it will still be a while. His soft, old voice is full of confidence and somehow beckons you to listen and trust him. A moment later, he was gone.
So, as I lie in the bed, surrounded by the people I love and who love me back. We reminisce about earlier days before the heart attack; days that, regrettably, put me in the situation I find myself now. So many years of waiting, such a hard, long road to get here. The moment is surreal for us all. At 6:30 p.m., Dr. Kwan again comes to see how we’re doing. He is hopeful now that the transplant will happen, but still cautions us not to become too optimistic. My friends and family took advantage of having his attention and asked many questions. It was during this period that the nurse entered the room.
It was nearing 7:00 p.m., and she told Dr. Kwan and the rest of us that the surgical suite has been reserved for us, Reservations for one at 8:00 p.m. for Dr. Kwan said I would get my transplant tonight, although, he’s not yet certain at what time. I asked if he knew anything about the donor, but all he could tell me was that the donor was a thirty-seven year old male. He would give me no additional information.
Now, it was at this point you could begin to feel the tension in the air. It was palpable; everyone was scared. I could tell Denise was frightened, the welled up tears in her eyes told the tale and like a chain reaction, everyone began to tear up. To break the tension, almost on cue, a nurse from the surgical ICU returned. She spoke kindly and said they were ready for me once the transplant was completed. She comforted me and urged me not to be frightened when I awoke; my hands will be restrained and. I will wake with the breathing tube still in use, which they do not want pulled out. Moments later, it was 8:00 p.m., time for my reservation.
As I lie there, my visitors began to come to my bedside for a final, teary good bye. It did not matter that the odds to survive were in my favor, this is some scary stuff and I was hugged as if it was the last time they would see me. During the ‘good-bye procession,’ yet another nurse arrived to introduce herself, and tell us she was with my surgical team. The nurse followed-up by saying the new heart is nearly here, and I would be going to surgery soon. Then talking to Denise, the nurse assured her that she would be updated every hour, or more often, if needed. They expected me to return to the surgical ICU about six hours after I leave here.
Swiftly, 8:30 p.m. arrived, and before I could finish saying my good-byes, two gentlemen came in to get me. With one final kiss good bye, an ‘I love You,’ to everyone, and tears now flowing from every eye in the room, I was quietly rolled out of the sight of my guests.
Today, I am enjoying my retirement with my wife Denise, my children, grandchildren , extended family and friends. We live in a small community in Texas where we volunteer in community events and I get vocal at city council meetings if required. I don’t do much writing anymore though. I wanted to document what I was going through so if I did die before my time, my grandchildren might get to know me just a little. As it turns out, my books are giving hope to many people all over the world. The concept: if I can still be standing after all that I have endured – that they too might one day overcome their trials, hit a chord for people from many cultures and countries
If my story interests you, search through the rest of this web site. Check out the reviews: The other excerpts too. If you want to pick up a copy, follow the link to the Amazon outlet that services your country.
My story is igniting hope in people with all types of diseases, and while I cannot say that hope will cure all of them, I can say for certain that the road traveled without hope is a dark road indeed.
Thank you, to the family that gave me their loved ones heart. Your family is in my prayers often and I think about my donor everyday. You gave me my life back and that is a present I will never forget.